Latest Thyroid Cancer discussions http://www.cancercompass.com/message-board/cancers/thyroid-cancer/1,0,119,71.htm Sat, 05 Jul 2008 00:00:00 GMT Sat, 05 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had TT on 5/13/2008 for a 1.5cm papillary, biopsy of thyroid post-surgery showed vascular involvement and cancer cells outside the capsule, whatever that means.  RAI scheduled for 7/23/2008. My doctor says she only does the thyrogen shot (expensive shots priced at $2000 but my insurance pays 70% of it). Has anyone researched or been advised the risk/benefit of using the thyrogen shot over the old fashioned way of going hypo from stopping hormone replacement for 6 weeks prior to RAI treatment ??  If going hypo for a full month is going to be more effective at getting ALL the thyroid cancer cells out of my body, I'd rather endure the discomfort of being hypo for awhile.  My endocrinologist advises to do the shots and not go hypo. The benefit of thyrogen injections is you are "hypo" for a much shorter time period, if at all because you stop the hormone replacement pill 4 days before the RAI......BUT... if I am going to put myself through radioactive treatment, I want to get the very most I can out of it !!  Anyone else dealt with this issue?   http://www.cancercompass.com/message-board/message/all,25741,0.htm gsthyroid Sat, 05 Jul 2008 00:00:00 GMT i had my surgery 8 month ago for thyroid cancer and had the RAI 6 weeks later,2 weeks ago i completly lost my voice people could hardly hear me on the phone,now it is getting better in the morning and toward the end of the day it starts to fade away.my doctor doesn't think it is associated with the surgery.anybody knows what could this be.   thanks http://www.cancercompass.com/message-board/message/all,25715,0.htm dina67 Fri, 04 Jul 2008 00:00:00 GMT I have had the same health insurance since 1981, they were very generous with me when Thyroid Carcinoma was diagnosed in 1986, paid 100% of partial thyroidectomy, and follow-up with my endocrinologist appointment/labs for 5 years without contest. Then, in 1991 they gently advised me that my Primary Care Physician could take care of monitoring the lab tests. Funny thing though, while the HMO sounded agreeable to me, they apparently told my primary care doctor that it wasn't necessary to take the Tg (Thyroglobulin) or TgAb (Antibodies), only the lab work for T3, T4 and TSH needed to be run, as a 5 year survival means "cure".When finally checked by the original endo, my Thyroglobulin test was 600. Off to emergency high dose Radioactive Iodine ablation I went. Since WBS was not helpful, the Thyroglobulin tests will determine whether I need to have a PET scan to locate any metastases. Now, after less than a year after ablation and two Tg blood tests, the HMO says I don't need to be followed by my endocrinologist anymore, and is denying appointment (with only 3 days notice before my appointment date). What gives? How many of you have had your HMO deny your appointment to your endocrinologist when you are being followed for Follicular Carcinoma recurrence? How did you deal with it? Well, I do know avenues for recourse, but they all take time; any thoughts on a fast solution?Needless to say, I'm upset about this. Yes, I can go pay my endo out of my own pocket, that's not the point; What if I do need a PET scan to find where the metastases is? Plus the posibility even more medical attention to resolve? This HMO interference is out of line. Am I being overly anxious? http://www.cancercompass.com/message-board/message/all,25704,0.htm CAgirl Thu, 03 Jul 2008 00:00:00 GMT Has anyone experienced night sweats while adjusting to thyroid medication? http://www.cancercompass.com/message-board/message/all,25626,0.htm Sterling Wed, 02 Jul 2008 00:00:00 GMT my cancer has stoped responding to rai. been fighting for three years now. i was supose to have the treatment dose of rai on tuesday. they called on friday and canceled said to come in on monday for options. sure wish i had some idea what those options could be? any one know? http://www.cancercompass.com/message-board/message/all,25536,0.htm jaycounty Sun, 29 Jun 2008 00:00:00 GMT Hi guys Just wondering if anyone can tell me what if any symptoms they had when there lymph gland was swollen.  My dr has found a swollen lymph gland  and keeps trying to tell me it is viral and has now put me on antibiotics but I feel fine no inflamations anywhere. Just wondering if anyone else has had the same problem.  I had a TT Oct 07 for Pap Cancer and RAI in Dec 07.Also what does neck discetion entail??Very stressed!! http://www.cancercompass.com/message-board/message/all,25533,0.htm Iolanda Sun, 29 Jun 2008 00:00:00 GMT Last summer I had thyroid cancer and had all the works done to me. It's not all gone so this summer I have to get it all done again. But lately my appetite has been horrible. I can't really keep anything down, especially grilled food. I take one bite and run to the bathroom. Anyone else have a problem with grilled food? Anything else that reminds me of the LID I can't eat either. Is it all mental? Plus all my taste buds are totally shot so everything tastes extremely bland. I wish I could taste food! http://www.cancercompass.com/message-board/message/all,25528,0.htm dontquit8941 Sun, 29 Jun 2008 00:00:00 GMT Anyone experience any hair loss while adjusting their levels on Synthroid? When does it settle down. (hoping it will) http://www.cancercompass.com/message-board/message/all,25522,0.htm Sterling Sun, 29 Jun 2008 00:00:00 GMT I am almost 3 weeks post RAI 150 microcuries. I became hypocalemic post surgery and hyperthyroid on cytomel pre RAI my parathyroids are not working still. surgery was in the middle of april Multifocule papillary cancer/resection 15 lymph nodes no spread.  My Gyno decided to do blood work yesterday just to see where I am at. I known her for 20+ years.  I am 50 year old woman normal weight 5 kids 1 still  at home. I am currently 14+ on calcuim very high and low on D even though I am on calcitriol my TSH is 48 very hypo I've been back on levothyroxine 100 mcg. since the last day of RAI almost three weeks. My mouth feels like it has been scalded with hot water the sores have healed exept the side of my mouth but I don't produce much saliva so my lips are dry and have a burning sensation like in my mouth. I have missed so much work and I am begiining to feel hopless. My Endocrinologist is an ass he just wants to refer me to a surgeon to remove my parathyroids I understand it can take up to a year for them to wake up. Beside the fact that it was a different surgeon than the one iwent to for the thyroidectomy whom Iiked. I have lost about 10 lbs and have no appetite, my concentration sucks and basically  feel like total crap. I have tried to keep a good attitude and look forward to going back to work if anyone has any advice for me I would appreciate it.   thanks everyone. http://www.cancercompass.com/message-board/message/all,25489,0.htm lizzie6 Fri, 27 Jun 2008 00:00:00 GMT I got the result of TG test, 6.3, 6 weeks post neck dissection surgery.  My End. doc said it should be below 2.  I was told that TG usually drops sharply after 2 months post surgery.  I was at 9.6 before surgery. So, I am pretty disappointed about the report.      I was told to come back and see him after 3 months.  Is it too long?  Was my TG checked too early?  maybe if i waited longer, it would drop further? I had my first 150 MCi RAI back in jan/08.   When should the next RAI be?  I went to 3 places, sloan kettering, Mount sainai, Columbia.  I was told 3 different treatment plans.   Sloan: 1 year per RAIMount Sainai: 6 to 8 months(Currently At) Columbia:  9 monthsI need recommendations...  Thanks in advance... http://www.cancercompass.com/message-board/message/all,25488,0.htm Danny2008 Fri, 27 Jun 2008 00:00:00 GMT I just heard from someone that had to go Hypo for RAI have like a crash feeling, fine one day, down the next.  I'm on day 11 of LID and Hypo and today is the first day I feel different.  She said she "crashed" the day before her RAI was scheduled.  She said, "your body crashes when it's ready.  Does anyone relate to that or is she just crazy?  I have puffy eyes and feel a little bloated but that's about it.  I've had pretty good energy levels this far, haven't missed any time from work and still go home and cook and clean up after 4 kids.  I must just be the exception, not sure. http://www.cancercompass.com/message-board/message/all,25482,0.htm angieml Fri, 27 Jun 2008 00:00:00 GMT Well - just finished my second time with RAI.  My first was normal, right after surgery, etc.....  This past week was so different.  Today I can laugh about some of it - earlier not so much.  anyway, here is the story.  Went to hospital to receive thyrogen injections Sunday and Monday.  tuesday went back and received RAI pill.  Went home and continued to want to sleep.  Just tryin to catch up from the sleepless nights.  Ok, now the next day go back and get ready for the scans.  the tech starts getting me ready, but she has an issue.  the scan machine doesn't stop coming towards my face and actually smashes it......  my husband came running over to help me wiggle out......  then we finally start the process.  my husband is looking at the screen and tells me it doesn't look the same as the last one a couple years ago.  i am just waiting to get out and go home, so i am not paying attention.  we finally get done, and the tech says looks good, looks clear.  we are so excited, we go home and i have a chilli cheese dog - no more iodine stuff.........  watching a movie and relaxing around 4pm and the phone rings - guess what?  it's the tech.  she says the dr. wants another scan and she needs me right away.  my heart sank, i started to get choked up.....  we jump in the vehicle and race to the hospital.  we get there and start talking with the tech.  things are adding up....  she is hesitating, not saying much,..... we get ready and she starts the scan again.  my husband watches again.  he says, you know what i think?  these scans now look like the real ones should.  i don't think she turned on the machine last time...............  we leave later that night.   the next day we are finally starting to calm down from the whole ordeal and guess what again??? my cell phone rings and it's  the tech again.  my heart sank.  i asked what now?  she said she just wanted to tell me "she" read my scans and they are all clear, but act surprised when the dr. calls.  OKAY NOW!  it's another day later and my  husband and i are laughing at the whole thing, but looking back what a scary week.  I do believe my scans are clear and will wait for the dr. to tell me the news, but tonight our kids and fiancees are coming over for a big dinner.  plan to celebrate - i am two years post surgery next week and am done.  clear scans - no cancer - going on with life.  still seeing my dr. that helps hollistic and on we go.   good luck to all and remember you can still laugh once in a while.j http://www.cancercompass.com/message-board/message/all,25463,0.htm Learn Something New Every Fri, 27 Jun 2008 00:00:00 GMT My wife was recently diagnosed with hashimotos, hypothyroidism, and then .... papillary thyroid cancer.  We traveled to Johns Hopkins and had an excellent experience.  Her thyroid was removed and the surgeon said if he left anything behind it was "maybe a few cells".  There was no evidence of lymph node involvement (several were biopsied beforehand and a few enlarged nodes were removed and tested) perimeter of the thyroid was healthy.  She had two cancerous nodules, both about 1.5 cm in size and both on the left side of her thyroid.  Our endocrinologist said that he is on the fence (leaning towards) whether or not the RAI treatment is necessary.  She is 40 years old, which is good, the nodules were under 2 cm, which is good, but it is multifocal - 2 nodules.  He said if she had 3 nodules, it would be a no-brainer, and if she only had only 1 nodule, he would advise against RAI.  He said some endocrinologist would probably strongly reccomend it, and others would strongly advise against it.  As I said, he could go either way.  My wife and I are trying to make the decision.  Our reservation of doing the RAI treatment is the increased risk of salivary gland, breast and GI cancer.  Any feedback (personal experience, knowledge of statsistics on prognosis with vs. without treatment etc ....) would be helpful.  Thanks.David   http://www.cancercompass.com/message-board/message/all,25460,0.htm David_Lee Fri, 27 Jun 2008 00:00:00 GMT Hi all!  Well, the labs I had rerun last week show my "levels" have all dropped since April labs....they're in the "normal" range and are supposed to be in "suppression mode"......synthroid dose was 150 all fall and early winter;  was lowered to 137 in February as I was a little "high";  April labs looked good;  now I'm going back to 150 again.  Doc feels all my sudden symptoms of insomnia and feeling crappy are related to these minor changes that have taken place since my last labs in April.  I was expecting to hear I was "hyper" because of the insomnia. Go figure!  My dosage has been increased back to what it was several months ago(150's)....Doc says it should "fix" things but it will take a little time.  I really like this Doc and trust her judgement but just can't help but be skeptical as my experience with this whole ThyCa and treatment thing has not gone as most commonly described.  The whole hypo/hyper thing has never made any sense to me.  When I was so hypo last summer while getting ready for RAI all the the symptoms I had fell under the heading of being HYPER....yet I was severely hypo.  Does this sound at all familiar to anyone out there?  This group has been such a lifeline for me over the year.  Any info or advice will be appreciated.... ..funny how misery loves company!   :O)      SUE http://www.cancercompass.com/message-board/message/all,25459,0.htm Susan52 Fri, 27 Jun 2008 00:00:00 GMT Hi everyone!I've finally found the time to come back and say hey after RAI.  Just have a few things to post....Probably will forget a few things but just wanted to let others know what I went through and what they might expect.....I went off my meds and on the LID....sigh....it was tough because I always felt so snacky--hungry--but it wasn't as bad as I thought it would be......I had my blood work done on 6/2/8-- ( a pregnancy test and TSH level).  I had to have a TSH level over 30 in order to do the RAI.  I was given the go ahead with a level of 159!I had the tracer done on 6/3/8.  I took the pill and then went home.  No restrictions.I went back to nuclear medicine on 6/4/8.  I had a scan done to see what the uptake was on the tracer dose.  It was 1.6%....which they said was good.  Apparently a normally functioning thyroid will absorb anywhere from 13-25% of the tracer.  I also had a WBS to see where any other uptake was...apparently it was only in the neck....I had two areas that were showing uptake in the neck.  One area my doctor was sure was in the thryoid bed.  The other area he thought may be a lymph node but further WBS would show that for sure.  It was from this scan that they figured out what my dose of RAI should be...they decided to do 150 millis since I had such a large nodule removed and several small nodules...plus some lymph node involvement.I was told that the "treatment" would be ready to take about two hours from the time I was finished with this scan.I took the RAI and then went home.  I was okay for the rest of the day.  I was so hungry because I hadn't ate that morning in case I became nauseous ( I didn't want to throw it all up) so I had some lunch as soon as I got back--not the best idea in the world...because then I took a nap and when I woke up--ugh.  Nausea.  I was told to continue the LID for another 4-5 days.  Sigh!I have to say I got struck with the nausea that comes with taking the RAI.  I felt it for at least a week afterward.  I never felt like I was on the verge of throwing up but...it was just a sick feeling in my stomach and it became worse if I moved.A few days later I went back for a WBS.  Everything looked normal and I seemed to only have uptake in the neck and the salivary glands.  I was told to start the lemon drops.....which I did but.... I will say that other than the nausea, loneliness, and being scared I only had on about the second day when I woke up--a pain in my face.  My salivary glands were swollen.....I started sucking on lemon drops but that didn't really help.  Honestly lemon drops didn't make me salivate...they made my mouth dry!  I even had pieces of skin from my tongue start to peel off so the after talking to the nuclear med people I stopped the lemon drops.I went back the following week for another WBS and again was told that it seemed normal and the the first year scan is really just used as a basis for next years scan.  Here's hoping it's all alright......  I was told that after this scan I could start taking my meds again.  I took the cytomel and synthroid together for three days and then stopped the cytomel and continued on with the synthroid.  I am only on 75 mcgs for now.  ( I have a endo appointment in July for follow up testing.)I spent most of the first week ( and second) sleeping, watching tv, movies and reading.  I really missed my family.  I have a daughter who is now 7 months and it was really difficult not to be able to be with her.The time seemed to drag on especially after about day 10...still 4 more days to go before I could go home.  My doctor put me on a strict 14 day ( 2 week ) isolation.  Let me just say I cried when I saw how big my little girl had gotten in two weeks.  It's amazing.....However, I made it!  I wondered how the heck I was going to get through it but I did it!  I don't feel any different yet (still have trouble swallowing, etc.) but maybe time will work its wonders.  I know that there is nothing to do but hope and wait until next year and the WBS.I wish all of you who are about to go through this all the luck in the world and all of you who have done this....I simply say...congratulations.....we made it!...for now.....:)!Take care of yourselves.  LQ http://www.cancercompass.com/message-board/message/all,25448,0.htm lrquake Thu, 26 Jun 2008 00:00:00 GMT I'm just curious on what other peoples TSH levels were after about 9 days of Cytomel withdrawal and low iodine diet.  My endo said I needed to have my level be at least 25 and it's 38.8, so I think that's really good.  Any word of advise for my RAI due this Monday (6/30/08)?  I have to stay in the hospital because I have 4 children at home.  I have Papillary Thyroid Cancer.  I had my TT on 4/1/08, and due to a contrast CT scan, my RAI had been delayed until now.  Also had 13 effected nods out of 31 in my neck.  Anyone have any case thats close to mine? Wish me luck.....oh and I can't wait to eat again.  I've lost 25 lbs since I found out I had cancer on 3/7/08.  I weighted 160 before, now I weight 135, haven't looked like this in 14 years.  Not a great reason to have to diet, but hey I'm not complaining about the loss. Thanks,Cancer in Oregon http://www.cancercompass.com/message-board/message/all,25434,0.htm angieml Thu, 26 Jun 2008 00:00:00 GMT Hi all!  My ThyCa/surgery/RAI took place spring/summer of '07.  1 year scan and bloodwork all came back terrific this past April.  In early June I started suffering with bouts of insomnia that won't go away.  And over the course of the past couple of weeks have "acquired" all the symptoms of being "hyper".....hot flashes, weight loss, nervousness, on top of the debilitating insomnia.  Called the endo and had blood drawn yesterday.  I'm assuming I'll be dropping my synthroid dosage. My question to this group is "whats up with this?"  Cruising along doing fine on synthroid.....137m for over 6 months.  What would cause this now?     SUE http://www.cancercompass.com/message-board/message/all,25400,0.htm Susan52 Wed, 25 Jun 2008 00:00:00 GMT Hi guys Just need to know if anyone else has experienced swollen glans in their neck that are sensitive to touch and should I be worried?  I have had this now for approx 3 weeks went to my MD yesterday and even though I have no ear infection or sore throught he thinks it is just a viral infections. But my glan is sore and I feel as though I have been scream all day the muscle is that sensitive and tight.  I had a TT in Oct07 and RAI in Dec 07 and have not experienced this. when it gets bad my left side of my tongue swells this is usually by late afternoon. Am I just panicing for nothing or should I alert my endo. I had Pap Thyca but it had not gone to my lymph nodes and I am just worried that maybe it is coming back. I would appreciate any responses of advise.Thanks http://www.cancercompass.com/message-board/message/all,25380,0.htm Iolanda Tue, 24 Jun 2008 00:00:00 GMT I have had constant pain and pressure in my neck on both sides since I had RAI for Thyca in Jan of 2007. I have complained to both Endo and PC MDs. Finally during my appt. with my endo after a clean scan done this March 08, my endo did an ultra sound in his office. He said I had two enlarged lymph nodes in my neck. He said he believed it was not thyca as I just had a clean scan. But never said what else could cause this pain for the past 1 1/2 yrs. I go to bed at night and am awakened with pressure and pain from lying down at least 3 or 4 times a night. I suppose I could go to an ENT but I know he will blame it on my smoking habit, which seems weird smoking never caused this before I had radiation. I realize it is a bad habit and bad for me, but I think MDs have a habit of blaming everything on that. I haven't felt right since surgery and RAI, and I am coming to the conclusion I will just have to deal with it for the rest of my life. Has anyone had this problem after RAI? Any response would be appreciated.Crabby Nanny http://www.cancercompass.com/message-board/message/all,25357,0.htm Crabby Nanny Tue, 24 Jun 2008 00:00:00 GMT I am in week 4 of being hypothyroid and week 1 of my LID. I am scheduled for my first ever RAI 131 treatment soon. I am so tired that I can't sleep. Does this make sense? I haven't been able to get a good night's sleep which is making all of this worse. Is this normal? Is there anything that can help - which doesn't contain iodine or red #3 (ha ha)? http://www.cancercompass.com/message-board/message/all,25344,0.htm rosalee3 Mon, 23 Jun 2008 00:00:00 GMT I was diagnosed 6/9/08 with follicular adenocarcinoma.  I had my first surgery to remove the nodule on 5/29/08, was diagnosed and had my second surgery (total thyroidectomy) on 6/17/08.  I would just like to know if there is someone out there who has been through this?  I meet with my endocrinologist in a week.  I have been trying to do a lotof research on the internet about it and the treatment options, etc.  My husband has also been doing this too.  Please help, any info would be appreciated.  Thank you.  http://www.cancercompass.com/message-board/message/all,25343,0.htm lvkl4l Mon, 23 Jun 2008 00:00:00 GMT Has anyone here had their first ablation dose and 6 months to a year later had an elevated unsurpressed tg reveal which caused a second dose or RA131?If so, could you share how high was TG after and before first ablation and did the second dose make the TG undetecible or negative (under 2).? Thanks, DP http://www.cancercompass.com/message-board/message/all,25341,0.htm denmurpar Mon, 23 Jun 2008 00:00:00 GMT Hi everyone.  my best friend was just diagnosed with thyroid cancer.  I was wondering if anyone knew of any "experts" on thyroid cancer that could provide me with info on the likelyhood of exposure to radiation (like holding kids when they have x-rays) causing the cancer.  Please help!  or, anyone who would be able to tell me of the liklihood of treatment causing other forms of cancer??? THANKS! http://www.cancercompass.com/message-board/message/all,25312,0.htm horselovergrl04 Sun, 22 Jun 2008 00:00:00 GMT New to this forum wish I would have found sooner.I was diagnosed Oct 07 had TT in Nov 07.  3 lesions (largest 4 cm) with lymph node mets.  I had my RAI the end of Jan 08, 163 mci.  I was then started on 112 mcg of Levoxyl but have been decreased to 88 mcg right now.  I have been experiencing pain which began in my jaw, thought it might be TMJ due to stress so I ignored it.  Well I am now having pain in my right ear and neck. Has anyone else experienced this?  Could be not related at all, going to endo soon just was interested in knowing if this could be something to be concerned about.Been a crazy 8 months glad to have found all of you. Thanks   http://www.cancercompass.com/message-board/message/all,25294,0.htm millie57 Sat, 21 Jun 2008 00:00:00 GMT My husband has just been diagnosed with metastatic thyroid cancer (I think that's what the doctor called it).  Anybody know what that is?  Surgery is scheduled for next month; the surgeon mentioned "thyroidectomy", but we have no idea how much he will be removing.  He also scheduled a left neck dissection -- anybody know what that's like?  Also, we live in Buffalo, NY and the surgeon is at Roswell - has anybody been treated there?  How was it, as a hospital?  Does anybody know how we get information from the doctors?  (He's only there one day a week, they told us, except for when he's in surgery.) http://www.cancercompass.com/message-board/message/all,25258,0.htm RiverarrowPs46 Fri, 20 Jun 2008 00:00:00 GMT